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Worried About My Mother's Safety, but no one else seems to see it.

Discussion in 'I care for a person with dementia' started by JackieJames, Oct 16, 2015.

  1. JackieJames

    JackieJames Registered User

    Dec 31, 2014
    83
    USA
    I have a brother who has POA and shares very little information with me. My mom is a little afraid of him as he shuts her down when she speaks. He gets annoyed quickly and easily when she repeats things. He takes her to doctor appointments, and does not share with me and my other sibling. I keep my distance as he is difficult and controlling.
    She is almost 89 years old and is very agitated, frequently angry, and suffering in late stage Congestive Heart Failure. Her reasoning is off, she misunderstands and is quick to anger. Most of this is taken out on me, the person who is most in contact and who listens when no one else will. Say this only to point out that perhaps I am an easy target?
    I have many concerns. Twice now she has been hospitalized for either failing to take, or taking too much of, a drug. I have tried to get in-home care in on a regular basis and she is not having it, as it is public services and she says they are no good and do nothing.
    During her last hospital stay, they decided she needs in home care now. Then they thought a nursing home for a time. They believe that she cannot be alone. Then (and I know this is an insurance/money issue), they have decided to send her home. She has fallen many times, been to hell and back with surgeries, a stroke, a heart attack, etc..There are too many things to list, but all I can say is that: she is closest to me and says has to hide it with the others as they, both of my siblings told her they don't want to hear it. I listen, but then she will misunderstand me or something and I try to explain myself and to her I am either "lying" or "not caring" or something. All confusing. Then my brother finds out that we have had an argument and blames me via a passive-aggressive email to the entire family saying “she has taken the phone off the hook. Has anyone had an argument with her”?
    . When I suggest in home care, she yells at me "would you like to have people come into your home, and that the “public” carers are no good. I cannot afford full time private care.
    I am concerned now because in the past few weeks it is progressing more than before. She does not realize that she is ill with CHF. Family kept this information from her. It was what she had always wanted. She cannot deal with the truth. Then hospital told her that her heart is very bad and her heart rate went off the charts due to her agitation. She is agitated all the time, and they are thinking she needs an anti-depressant. Her doctor is “too busy” to talk to anyone (it is a clinic) and here in the US, they will only just get back to my brother and tell him I have written them what I think. So it is a useless circle.
    I just don’t know what to do anymore. Brother has POA, takes her to doctors, will not listen. I sent him a letter outlining what I see in her behaviors. No response.
    He believes, erroneously, that he is doing it all. He takes her to the doctor. But, he does not clean, cook food, shop for all her needs, etc,
    She has been hospitalized 3 separate times for failing to take her Lasik (water pill) for her heart condition, Another change. She was always medicine compliant in the past. They had to put an alarm on her bed because they told her not to get out of it alone (she had fallen again) and was in hospital. In the past, she was medically compliant. I pointed out both these things to my brother. No response.
    She is quick to misunderstand, will not listen to reason, becomes angry, slams the phone down and takes it off the hook, which is dangerous because then the alarm around her neck to call for ambulance will not work. I was very careful in my letter not to blame him but to point out the facts. He thinks he, and only he, gets’ it and that the rest of us (siblings) are useless. His words. Or we are stupid. This does not matter, but her well-being and safety do matter.
    It is not so much about this sibling being who he Is, but rather that he has all the power, and he doesn’t see what I see. She seems to tell him that all is well. He has chastised me on occasion for writing him in the past when she would tell me “she could not breathe”. He would call her and she would tell him she is just fine.
    I cannot get a diagnosis and I cannot keep her safe. He believes she lies, is manipulative, etc. I believe she is ill and that this is really a huge personality change.
    The way she behaves now is a 180 degree turn-about from who she "was" all my life: an easy going, caring, loving woman. We always were very close. At times, she is "back again" and has said "you are the only one who understands this", or "don't pay attention to me. It is not you".
    So sorry for the long rant here. I admit to feeling overwhelmed at this point. If I repeated anything, I am so sorry.
     
  2. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Jackie - you can't constantly feel you have to apologise, love. This looks to be a nightmare of no communication. I can't see a way through this if no one is going to be approachable. Think the family need to get together - as many of you as possible, have a meeting (God help us!); clear the air, and get on with looking after Mum.

    It sounds like my family, all the fighting and put-downs. You'll never work things out in that fashion.

    I'm sorry love, but if that was my brother, I'd put my foot down, say something like "How dare you," and "Can we please all behave like the adults we take ourselves for." Hard words, I know. But you sound as if you're trying too hard to be a doormat. I've done that act all my life. All you get, in the end, is angry.

    So Brother has POA? Surely that's a legal thing and he had to sign up to whatever the rules of having one are? I've never seen the form, but there are plenty here who have, and who have been through that process. I'd start there, if I were you, and ask just what Brother's role in all of this should be. It certainly isn't moaning that "he does it all"!

    Hope someone else comes in with the POA thing to give a bit more info as to what it means. I wouldn't mind knowing myself.
     
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    I am so sorry to hear that you are having such a difficult time because of the people who are well rather than the person who is ill!! You are indeed bearing the brunt of the this!!
    I just wondered if it would be possible for you to persuade your brother to let you go with him to the doctors appts? It sounds as thought that may be too much of a compromise for him :(

    Can you find a carer that your mum really likes and then persuade to have inhome carers as 'companionship' once a week or twice a week and gradually adjust her?

    Here we have day centres - do you have a day centre she could go to (you might have to be very strong to get her to go in the first place but lots of people find that once they go they really like it)

    Keep posting x
     
  4. JackieJames

    JackieJames Registered User

    Dec 31, 2014
    83
    USA
    Thank you for your replies. She is mostly bedridden at this point. husband and I do pay to send in a cleaner once a week, and for groceries, and more ... but just can't afford a day Carer. She will not have anyone in from public services. After this last hospitalization, nurse came to the house and I happened to call on the telephone while nurse was there. My mother handed phone to nurse and as nurse was speaking to me, my mother said in the background "what can she (meaning the nurse) do to help me?" and then to the nurse "tell her (me) to stay out of my life". She sent the nurse away (someone she liked) and no one came back. I don't know what to do.
    My brother refused a family sit down which would amount to he and I and possibly other brother (who is not well, emotional problems and who cannot cope very well with what is going on). I know I am being a doormat but only because I have to be and only for now. I know when someone has the power and I do not. My other brother send a letter to my mom's doctor, and the doctor called my brother with POA. Brother then screamed at my other brother and said what a stupid thing to do.

    She simply will not have anyone in. I cannot afford private carer on a daily basis and don't know what to do at this point. Very dysfunctional family.
    I love my mother dearly. I know this is not "her", but cannot make anyone understand this fact. She told me yesterday not to call for a year. Of course, she will call today. It always happens. She will say "you are the only one that understands". "I am the closest to you". Then she is out of it again, and I am bad. All of these things and the medication non-compliance & resulting hospitalizations make me believe it is a cognitive issue. I am not a doctor but my brother will not see it. He believes he is brilliant and we are all dummies. Of course, that is the thinking of a person who is seriously limited.
    Denial is not only a river in Egypt.
     
  5. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,955
    The situation's heartbreaking, I don't see how you can "break through" either.

    Do you have an astute, trustworthy, confidences-respecting friend, relation or "people worker" colleague (eg a priest or nurse) to talk through these issues with?

    It seems to me the main questions you need to answer now are:-

    "Is there anything more I can practically do to protect Mum, given my powerlessness and that of other family members?"

    "If I and other members of the family back off, will that reduce my brother's refusal to get in help for Mum?"

    "What can I tell myself and do to make it easier for me to live with myself when Mum suffers all the difficulties I've warned my brother and her against?".

    I'm an activist myself. The hardest advice I've ever followed has been "Let be ... and let God". Sometimes it is the only thing anyone can do.
     
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    oh I am so very sad for all the difficulties you are having. You have tried everything!
    I think backing off may push your brother into doing something but it may not - it might be impossible for him to back down and so personally I would be a bit reticent about doing that. What a shame that your mum did not accept the nurse - it would be worth asking them to send someone else I think. Is there any way of implying to your mum that the replacement is a private carer - it's only words but it could help!

    Even if we can't be much practical help, we are here to listen, so please stay connected and so often people come up with gems of ideas that have worked for them :). Thinking of you
     
  7. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    I'll second that last thought, fizzie.
     
  8. Lawson58

    Lawson58 Registered User

    Just a thought, if your brother has POA, then he has certain responsibilites that he is obliged to fulfill and if he is failing to do this, I think there are legal things you could do to remove him from having this position. I live in Australia so don't know how it operates in UK but if he is not prepared to be a responsible attorney then he shouldn't be taking it on.

    Obviously, the last thing you need is additional family stress but something needs to be done to care for your mum's well being.
     
  9. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Lawson, it looks like Jackie's in the States; but you're right. There must be legalities that had to be signed for. I never even knew about such stuff as POA and everything else talked about on this site until I joined.
     
  10. JackieJames

    JackieJames Registered User

    Dec 31, 2014
    83
    USA
    #10 JackieJames, Oct 17, 2015
    Last edited: Oct 17, 2015
    thank you all so very much for your comments and suggestions. I have been reading here for a long time but have not posted often because 1) she does not have a definitive diagnosis and 2) I see people who have it so much worse.

    To get a lawyer involved would be a long process and expensive and it would mean my taking over POA and to be honest, my mother trusts my brother after 8 years of this, and will not go to the doctor with others. I worry that she is in end stage CHF and doesn't have long. when I think these things I feel guilty. Though I have been to the ER with her and to the Nursing home, etc. Without a diagnosis, we cannot "force" any issue and, of course, I feel guilty even "thinking" she has this illness. Yes, I called Alzheimers association here in the US and someone spoke to me and told me I cannot "force" the issue. I don't want her ill. They test her with those 3 or 4 questions and she passed the "test" every time. So my brother thinks she is fine. I wonder if: what is your name, where do you live and what day is it, is really enough? Is it?

    Now she literally will not answer the telephone all day yesterday which has me very scared. I would need her permission to visit her as she doesn't want people around, as I said. I generally call daily and depending on the day we either have a good talk or a very bad one.

    I am really getting sick over all of this. I worry. I lost it on the phone the other day and said "if you won't have anyone in to help, you might have to go to a nursing home. She has been refusing help for a couple of years. That was it! She yelled at me and said "you are a very pushy lady" and don't call me for a year! Then she never responded to the calls I made the next day. I only wanted to hear her voice to see if she is okay. I was not going to talk. I am so scared. And, hate to say it, but I do feel very helpless and filled with guilt. I am not a full-time carer, I am not doing what I am supposed to do .. be there every day ... doing all of it. If I ask if she drinking the Ensure, she calls me pushy, too. I cook and she does not eat. Shop for the food I hope she likes as well and she says "you expect me to think of food when I am suffering this way, or something to that effect". She is so angry. She tells me about my brother and how he will not allow her to speak much or to say what she feels, but it seems that my willingness to listen hurts her as well as me. I feel so stuck. There I have said it and I have much shame about this. This is not my mother. She was never this way. While imperfect, like all of us, she never ever was this way. So she doesn't eat, doesn't take some of her meds (the water pill in particular) and that lands her in hospital. Why can't he see the change or at least see that she is medically non-compliant and will not have anyone in ... she says she wants someone who will come at 2pm or later as in the morning she is more ill. I think this is true and I know how it sounds. I understand this but I don't think the public services here in the US are going to come on her schedule. I have tried to mend fences with this brother, but when someone wants to hold onto some anger that you don't ever know what they are angry about, what can you do? She believes he is doing all the right things, I guess and that I am, somehow being critical when I say that she may have cognitive impairment. If this sounds a bit confusing, my apologies. I have been awake all night and can't sleep. I wonder if she even knows that I really do love her. It hurts. She is here, but she is not here/ My brother sends us these notes like: remind her to take her water pill. Well, in the same day, both he and I had called and the next day she could not remember. That was when I sent him the above letter. In it I told him you can't remind her effectively, because her short term memory is not good. She was compliant before and is not complaint now. I also mentioned that while she was in the hospital, they had to put an alarm on her bed because she was getting out of bed despite being told not to (she is unsteady on her feet and was in for another fall). So I said to him "In the past, she would have minded them telling her not to get out of bed. This is yet another thing that points to loss of short term memory. She was medicine compliant and medically compliant in the past, but is not any longer. Of course, no response to that letter. Makes me feel a bit crazy.
     
  11. JackieJames

    JackieJames Registered User

    Dec 31, 2014
    83
    USA

    Fizzie, great suggestion, but she does still know the difference and wants no one. She has sent people away. The other day, the physical therapist called her about exercising. She told him no for the second or third time. She is too weak. I asked that she allow him in to see that she is too weak. This is what enraged her and made her say to me "you are a very pushy lady and then "don't call me for a year". I tried to explain, but she never allows me to explain. Not sure I understand why. She accuses, but does not allow one to defend against the accusation. My thinking might have been off, but I thought perhaps he will see that she is very weak and needs care. Oh, I jut don't know anymore. Getting so tired of coming up against walls.
     
  12. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Maybe, just maybe, Jackie, you need to just take a few days off from this, so your own poor head can recover. I feel so sorry, and apologise if that offends.

    The walls are constantly made of brick, aren't they. I know that situation well.
     
  13. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    What a horrible situation, Jackie, I'm so sorry. I don't really have any ideas other than what the other members have posted, but must say that I agree with Chuggalug above - I think you need a break from all this, I really do. You sound close to carer's breakdown.

    I know it will feel impossible to step back. You will feel that you simply can't. I've been there and that's how it felt to me. But I did it because I just had to, and everyone survived. Once I was feeling emotionally stronger and more able to cope, I was able to pick things up again and be more involved once more.

    Please, please, consider yourself in all this. You are important too, just as important as your mum, and your brother. Your life is just as important as anyone else's. There is no hierarchy, we are all equal.

    I truly hope you find the courage to step back for a while, and we'll all be here to support you while you do it.

    Hugs xx
     
  14. JackieJames

    JackieJames Registered User

    Dec 31, 2014
    83
    USA
    I am not offended at all. Bothers call once a week and speak for a few minutes. Not judging them. I just worry every day that there will be some crisis, some fall, something ... and there is a major history to crises in her own home that lead me to t his conclusion.

    I understand. I is jut hard to leave a helpless, seriously ill person alone.
     
  15. JackieJames

    JackieJames Registered User

    Dec 31, 2014
    83
    USA
     
  16. JackieJames

    JackieJames Registered User

    Dec 31, 2014
    83
    USA
     
  17. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
     
  18. susy

    susy Registered User

    Jul 29, 2013
    806
    North East
    This is an awful situation for you to be in. I also will echo the sentiments that you sound like you need some time off.
    I would be going down the line of informing the brother with poa that you are taking a week off. And go for it. You don't have to explain to anyone. You care very much for your mum this is clear. To continue to care you need a bit of time for you to recharge your batteries, in the mean time your brother will look after your mum to the best of his abilities until you come back to help.
    As for her not accepting any form of physio or care..... Are you or they asking her permission? Or are you or they coming into it like it's already going to happen..... "Right Mrs X, my name is "Fred" we are going to get you washed and up in the chair now, hold the side of the bed and I will help you up" or whatever? I feel that with a reluctant person, this approach is the only one that will work, if it doesn't I don't know of any other that will.
    If you asked my dad if he wanted to go to day care he would say absolutely not. He is therefore told 10 minutes before pick up that he is going to day care .... Queue every illness in the world..... Yes now here is Jean, she is here to take you .... (Him) hello Jean, nice to see you. What do you want me to do..."
    My mum always used to ask him if he wanted to do anything.... He always said no. No to care, no to washing, no to anything other than food. Once she changed her approach it helped him have a much better quality of life.

    I hope I haven't offended anyone. Everyone's experience is valid and on this point I'd love to hear how others have got round it too.
     
  19. JackieJames

    JackieJames Registered User

    Dec 31, 2014
    83
    USA
    #19 JackieJames, Oct 17, 2015
    Last edited: Oct 17, 2015
    She has no diagnosis of dementia so we cannot "tell" her what to do. That is the problem. No law her that says you can force anything against their will. I explained to her four times: "Mom the physical therapist will come to your house and not force you to exercise. He may work with you on other things. I said this four times in a row. And her response was: "You want him to come in and you don't understand that I cannot do exercise.
    She also said " I will work on getting better by myself". She is in a late stage of congestive heart failure and is very weak. There is a definite disadvantage to a person not being told they have a condition. She never wanted to know so doctors and family kept the diagnosis from her. At times she would ask me "what is wrong with me"? I would start slowly by explaining "your heart" and she would stop me. How could we ever get palliative care, if she does not know that she has congestive heart failure. God forgive me, but I want to run away.
     

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